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  • Writer's pictureMichael Lenz

"Unmasking ADHD: Rebecca Stein's Journey of Misdiagnosis and Discovery"

Unveiling the Journey of Diagnosing and Managing ADHD and Chronic Pain

This is Rebecca Stein's story. She reached out to me through one of the ADHD women and girls online virtual conferences and said, 'Hey, I like what you're doing, and I do a lot of work myself as a psychologist working with people who have similar struggles" A shared kindred spirit of helping people who have similar struggles, but also having some insight wisdom to share with others.

Rebecca shared,

"My own story is that I have a history of chronic pain where I had insomnia at one point. People that are familiar with Dr. John Sarno and his work with the mind-body syndrome know about some of the psychosomatic or mind-body connection between anxiety and pain. I was having a lot of anxiety, but I did not know at the time that I had ADD, which just exacerbated everything. As you can imagine, I think with women, which is my specialty, I think the symptoms are just totally overlooked. And I was very smart, intellectual in school. I would tend to be more introverted and my hyperactive thinking which would keep me up also at night. I think insomnia and then stomach pain issues. So I also have very real Crohn's disease."

Crohn's is a nociplastic pain pain condition where there is tissue damage compared to nociplastic pain which involves the central nervous processing stimuli and one experiences pain that feels similar to nociceptive pain. It is often hard to tease them apart. And to make things more complicated, about 40% of people with Crohn's can also have irritable Bowel Syndrome.

"Other psychosomatic things like just getting a pain in my hands a lot, like achy pain. And fatigue is definitely been something in the past, but since then I'm a therapist and I've worked at clinics. I worked at the Hallowell Center with Dr. Hallowell and It's ironic because I didn't know at the time that I had ADD, but I had a feeling and I tended to date people with ADD who always said, I think you might have ADD. But I was just like, I don't know. And all the kind of psychiatrists I saw at the time said, you got really good grades. There's no way you could have ADD. Which is just a total misconception. And so basically I ended up getting diagnosed with ADD and learning how to manage my symptoms really by treating some of the ADD with psychopharmacology and therapy and coaching myself."

These are shared misconceptions that I have seen too often in my work with patients. The diagnosis of ADHD may have been brought up, but because they were getting As and Bs, and sometimes straight As, the possible ADHD diagnosis was ignored. The average IQ of someone with ADHD is very high.

Rebecca continued,

"just noticing there's such an intersection because when the ADD isn't treated, there's just so much stress on the body, especially for women. Because you're dealing with this and almost feels like you're all alone because professionals for a long time didn't recognize these symptoms."

There is an underlying issue that is difficult for others to comprehend. External appearances often involve a facade of perfectionism and behaviors resembling OCD, which can obscure the true distress and situation.This encapsulated Rebecca's experience and the benefits she derived from it.

Exploring the Impact of Personal Experiences on Career Trajectory

She shared how her experiences influenced her career trajectory.

"I wanted to specialize like specifically with women who also have a lot of just I've noticed a lot of like hormonal. Hormonal problems that are common with ADD, that's, there's a lot of new research about new moms, just the stress that they undergo in relationships as well. Yeah. I think I was just daydreaming a lot, which is one of the major symptoms. It was very creative and my mom always told me that I was really smart. I was like stuck with that. So it was like this inner strength that even though I had all these thoughts jumping around, it's I must be smart. And so I linked to that. That helped propel me. I was very lucky in that my teachers gave me validation. And so it was like, despite my brain being very jumpy and it was a struggle to prioritize, my teachers liked me and that could have been from my own masking of just people pleaser patterns. But that was a major thing was just daydreaming, prioritizing, leaving things to the last second. And then it would always lead to burnout. So that was like the common pattern. It was just be like almost getting into this fight or flight mode last second and then complete burnout and shut down. So my nervous system was really going from like highs and lows, which just exacerbated the pain."

Rebecca shared how for her and those she works with a recurring pattern.

"It's really when the demands of life and things that are going on exceed the resources you have. And that could be like internal and/or external. So it's just like too much total overwhelm and the body going into this from a polyvagal theory perspective, right? It's shut down state where it's called like the dorsal vagal state where it's just feeling like you like can't get up even and incapacitated almost. Even if there's like a part of you that might really want to do stuff. You're just so tired. And it can even it's like the things that would bring you joy, just not quite because you don't have the energy. I think with depression, there's more of these critical thoughts towards the self and they can blend into each other, which is common with ADD because you get a lot of feedback from other people. If you turn things in late or family members specifically, which is usually what you see where you're getting criticism. I see that with my clients also is this immense amount of shame. So if the shame is combined with the burnout, it starts becoming more of a depression. You're starting to really attack yourself. Like all this anger is going towards the self. I got diagnosed with Crohn's when I was 17 and had emergency surgery when I was in high school. Up until that point, I had learned to ignore my body and just push. I was really raised in this environment of school is number one, no matter what. And even though I was starting to have some gastrointestinal symptoms, I was really tired."

For many with chronic pain there are sleep disturbances and poor sleep hygiene. For many this can be the ADHD itself and sometimes Restless Leg Syndrome. She described her sleep schedule,

"I would stay up really late because I couldn't focus in class. So I would come home and I would pretty much teach myself what was taught in the class and then I would get like very little sleep and then come home and then pass out and take three hour long nap and then it would just be over and over again."

Dealing with chronic conditions like ADHD can make getting the right diagnosis a long and challenging journey.

"When you're dealing with a chronic condition like ADHD that impacts your entire life, receiving the right diagnosis can feel elusive and sometimes takes years. I saw numerous doctors, experienced medical gaslighting, and was often misdiagnosed as suffering only from anxiety when my underlying ADHD remained untreated. This added a layer of stress and hardship, especially since I tended to internalize others' misconceptions and criticisms."

Rebecca shared an eye-opening and turning point experience during her time working at the Hallowell Center with one her patients with ADHD.

"I realized that my symptoms matched those of my patients and sought a formal diagnosis. Eventually, I found a professional who took my symptoms seriously and diagnosed me with ADHD. This diagnosis was a game-changer in my approach to managing my health and stress levels. Medication made a significant difference, reducing my anxiety and related pain. By treating my ADHD with Vyvanse, coaching, and organizational strategies, I saw clear improvements. My immune system improved, and I experienced fewer colds and illnesses. Addressing both the ADHD and the interconnected stress and anxiety helped alleviate many of my chronic symptoms."

Effective treatment for ADHD and chronic pain often requires a holistic approach, combining therapy and coaching. It's not enough to focus solely on trauma or executive function; we need to address both aspects. Some styles of therapy is excellent for releasing emotions that feel like they are stored in the body, but it's crucial to also have strategies for executive function and crisis management. Being flexible and understanding when to address long-term trauma versus immediate needs is essential for effective treatment.

The Importance of Early Diagnosis and Support for ADHD

"Finally getting diagnosed with ADHD brought a mix of relief and grief. Relief for understanding my struggles and grief for the lost years and opportunities. Early diagnosis and intervention could have saved me a lot of distress. Misdiagnoses and misunderstandings can lead to more significant issues, but recognizing the signs and seeking help early can make a vast difference. For individuals suffering from chronic conditions like ADHD and related pain syndromes, finding a supportive community or a knowledgeable therapist can make a world of difference. Connecting with others who understand your struggles helps alleviate feelings of isolation. If professional help is accessible, pursuing therapy and coaching is highly beneficial. If not, support groups and creative outlets can also offer significant relief. The key is not to lose hope and to find at least one safe connection you can rely on as you navigate through your challenges."

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